Monday, July 24, 2006

Update as of Monday July 24, 2006


Hello Everyone,

Maria drew me a beautiful picture today. She draws me beautiful pictures every day. It’s funny how much more I cherish her artwork than ever before. I always loved to get pictures from her, but now I take the time to appreciate them more. Why didn’t I before? She draws such beautiful pictures of her and me doing all sorts of things together…riding on our bikes, playing in the snow, playing ball outside. She makes me feel so very loved. I make it a point to spend as much time with her as I can without it seeming strange to her. There are many times, though, when she is playing outside or somewhere in the house and I just want to go to her and watch her, be close to her, listen to her, love her. I don’t want to disturb “normalcy” for her though, so I try not to be too obvious.

Last week I did something I don’t usually do. I ventured to a website of another child who had what Maria has. Trent went to heaven on April 3rd of this year. He reminded me a lot of Maria. Not just in symptoms but in other things. He brought joy to his entire family. His Mom wrote about how she would hold him at night. He would flip his legs up over her’s and ask her questions about heaven. She would answer his questions and tell him what a wonderful place heaven is. Then he would drift off to sleep as his Mom quietly cried. This reminds me a lot of Maria and me. I could feel what was in this Mother’s heart and I cried. Since being diagnosed, especially in the beginning, Maria often asked me about heaven. Kids are really so wise. She could see herself deteriorating in the beginning and though not a word was spoken about what might be she asked the questions it pains your heart and soul to hear. Her sixth sense was still functioning just fine. What I thought particularly lovely about my Maria is she associated death and heaven with Jesus. She asked me, with such fear, if she would have to be nailed to a cross like Jesus in order to go to heaven. My heart broke and I could barely gather the strength inside to tell her with a reassuring face that “no, of course not. Jesus did that for us so we wouldn’t have to”. What I thought to myself though is how Maria really is so much like Him. She is bearing her own cross. What Ed and I would give to take that away from her. Sometimes I worry. I try not to because I know worry and anxiety are not productive. I worry that I have to try so hard to be a better person. I think this for a couple of reasons. If I could just be better maybe that would help Maria. Maybe God would reward my “good behavior” by sparing her life. If not, maybe it could shorten my time in purgatory so I would be able to get to heaven sooner to be with her if she goes first. Because I know she will go straight to heaven. I told my wonderful friend and neighbor when Maria was first diagnosed that I had to go first because she will just be too scared to go alone, and I need to be there for her.

There is so much good here. Let’s focus on the good. Let’s focus on Christ. I have seen the face of Christ more times in the past few months than ever before. I see Him in so many of you. Your kindness, your prayers, your love. It is overflowing and that is SO good and so positive about all of this. Ed and I have been given a great gift from God through all of this pain. I really feel He is so very close to us now. We are so thankful to Him for the graces He has given to us. He has blessed us tremendously. After Maria’s last MRI Ed and I talked about the fact that we have been given a great responsibility and we must respond to that. We are praying about it and following Him on the journey He is leading us on. All of you are part of this journey. We are all so very blessed. Let’s pray that His will be done.

Maria is just so beautiful. One day I walked into the kitchen and saw a picture taped to the window. It is a picture that Maria drew of herself and her Guardian Angel, Daisy. She wrote “Me and Daisy” at the top of it. Daisy, please watch over her well. I would love to share all of her pictures with all of you. Many of you have your own little artists at home. I know you know my Maria when you look into the eyes and hearts of your own children. No wonder Jesus loved the little children. They are all so beautiful. I try to stop and soak in all that beauty each day. When you do, nothing else earthly seems quite so urgent to get to as it did before. I realize the gift of time. The gift of today. I’m thankful for that. As Mother Teresa said, "Yesterday is gone. Tomorrow has not yet come. We have only today. Let us begin."

Thank you all for your continued prayers for Maria.

Love,
Ed and Megan

18 comments:

Anonymous said...

Megan, thank you for sharing your heart with all of us....strangers but united with you in prayer. I was so touched by your posting today....the honesty of it and the emotion you so openly and eloquently shared. My heart breaks for all the precious Marias out there and their families. The Blessed Mother's wonderful namesake certainly was given to an outstanding family and God is using you mightily to touch so many lives.
I continue to pray daily for you and your family, but mostly for your brave and beloved daughter. much love and many prayers from a fellow parishioner, Melissa

Anonymous said...

Thank you for being so encouraging and inspiring to others. May you feel His comfort and support all around you, and never doubt, only HOPE. So many people love your family.

Maria is a very special child. We would love to see some of her artwork. Would you consider posting something she drew?

You can count on our continued prayers.

Anonymous said...

I heard about your website on the "Fish" radio station. My heart goes out to you and your daughter. I will pray for Maria and your family, that she will survive and that you all will get through this difficult time.
Jennifer

Anonymous said...

I also heard about your website and Maria's story on the Fish 955.5 FM radio station. I too am a Catholic and will pray directly to Jesus to heal your little Maria. Jesus is the healer and we can go to him directly. He said to let the children come to him and we are all his children regardless of chronilogical age. I have put Maria's picture next to my computer so I will see her often and stop to pray for her each day. I will also offer her name at our mass intentions each week. Peace be with you, Kathy.

Laura Notarianni said...

Megan:
I enjoyed our quick encounter on Saturday evening. Summertime is so busy ... I put my rosary in the pocket of my shorts this morning on my way to vbs and thought of your kind smile (and cute t-shirt)! Enjoy your gifts today. Laura

Anonymous said...

Dear Megan,

Just remember when you are doubting how "good" you have been in His eyes, that God knows what you are going through, because he went through it Himself. You and Ed are bearing crosses, too. I can't imagine a harder experience to go through, and you do it with such insight and grace.

I do believe that our earthly life is "school" for the real thing: Heaven. If that's the case, all of you are getting an A+. All of us parents SHOULD go to heaven before our children. That only seems right. I am sure with everything in my being, that those children who do pass on before their parents are not scared, even a little bit. God wouldn't allow that. I also believe that when we get to heaven, that everything that happened during our "temporary" lives make perfect sense, and there are no more worries.

I am praying everyday for Maria and your family. I learn something from you and Ed, everytime I read your website. I appreciate my family more, and I have become a deeper Christian because of you. Thank you.
PS Hug Maria whenever you want to! Let that be the new "normal!"

All My Love,
Wendy

Anonymous said...

Your posting today reminded me, nearly exactly, of a song played on the country stations that must have been written by a mother who experienced what you are. It's about a little girl who "barely just turned seven...and who will hold her hand when she crosses the streets of heaven?" The song is poignant, touching and tears my heart out but I know I must listen to it because in some way it is helping the mother who shared her heartache and grief in this way. Just as you share your fears, joys, heartache and grief through this blog. Our prayers continue for all of you.

Anonymous said...

You are so right about the sixth sense of little children! Your posting today reminded me of a story a dear friend shared with me many years ago. Her nephew had leukemia, way before it became one of the more "curable" cancers. On Good Friday he said to his mother, "Don't cry, Mommy. I'm going to be with Jesus on Sunday." My friend's nephew went to Heaven that Easter Sunday. How blessed children are. Cry if you must, cry if you want to. Your daughter has more than enough faith for all of you.

Anonymous said...

Dear Megan and Edd -
Every time I read your posting I just think what amazing parents you both are. You make me appreciate my children and my husband so very much. I think the way you spred God's word is so powerful and is touching so many people, God must think your family is pretty special to use you in such a spiritual way. I believe you are both doing exactly what he intended you to do and I hope and pray along with so many that he heals Maria. What a testimony to prayer and love. My little baby had a small medical problem when he was born and the 24 hours I waited to find out the results I never stopped praying and called everyone I knew to pray as well. God is listening to our prayers, he wants us to talk to him.I know he is seeing what a wonderful gift you both are to him. God bless your family for all your strength and faith. I am praying for your baby as I write this and hug her too much always.
Jodie

Anonymous said...

Megan,
Thank you for sharing your emotions, I had tears in my eyes as I was reading your thoughts. The other bloggers said it - you and Ed are bearing you own crosses - but you are not alone. The power of prayer was displayed in the awesome results of the MRI, now WE can't give up and or think negatively and keep on praying towards seeing even more awesome results from the MRI on September 7th. I say, WE, because although we may not "personally know" you and your family, we are all here for you and are somehow going through this with you. You are doing an excellent job in how you are handling yourselves and communicating with Maria. You'll always do the right thing and it never hurts to show love. We all love you and we are continuously praying for another awesome result.
Always keeping you in prayer,
The Hite Family

The Scalise Family said...

Megan,
I can literally feel your pain and sorrow when I read your last update. I cried and cried again. I'm deeply sadened that you have to go through this and sadened that anyone has to experience it. But you're right Christ is with you and your family every step of the way and SO ARE WE (the people). I have a 9 year old daughter and a 2 year old son. I often think of Maria when I look at my children. I think of how it can happen to any of us and we never know ahead of time. I cherish my babies and I understand how you're holding on to every second with Maria. You just do that. It's ok. You do whatever you feel you want and need to where she is concerned. I would love to meet your family and little Maria. My daughter actually goes to IHM in Cuyahoga Falls. My daughter asks about Maria all the time. We have been following your story since day 1 and will continue to praise god for all and continue to pray for Maria for hope, peace, and most importantly HEALTH. God Bless.
Love and prayers. The Scalise Family. mscalise71@yahoo.com

Anonymous said...

Dear Ed & Megan

I saw your beautiful Maria today in the Wendy's parking lot. She was with her friend and she looked so happy and normal. We pray for her miracle constantly and strength for your family. Thank you for sharing this journey with us. I too am trying to be a better person. I pray more and cherish every second with my family and friends. Never give up HOPE! We will keep the prayers coming! Love, Kristin

Anonymous said...

Prayers for you all continue in North Carolina!

lorenec@comcast.net said...

Just so you know that an AA group, "Alcoholics 'R Us", prays together for Maria and Kaitlyn (an Avon Lake 10-year old who has a very rare auto-immune disease) every Monday evening. We are a very powerful group of pray-ers and are united in our belief in a miracle for both of these young ladies!
God give you strength and peace!
Lorene

Anonymous said...

I admire your faith in God! Maria and your family are in my prayers and I have asked my family to pray for you too. Children are God's greatest gift! God bless! Christina

Anonymous said...

Praying for you and sending you a hug. Keep fighting! Maria is a beautiful child and I'm hoping that she will win this horrible battle. I know that feeling of desparation and hope and some child is going to help us find a cure for this awful tumor. Blessings.

Karen
www.leahsjourney.com

Anonymous said...

I heard about little maria from a friend. As I began to look at the website I was blown away by maria's story. You guys don't know me, but I don't even think that matters. All I know is that her story has brought me closer to Christ and I am in awe from the families love for our faith. I have been praying and will continue to pray for maria and the family. God Bless.

Bill_VanderWesten said...

Hello Ed and Megan,
I hope this post of encouragement reaches you. I tried to post just after we last saw each other but i guess it was dropped somehow? Please foward your contact information Matoka and I would like to stay in touch with your family and follow Maria's progress more closely. Our hearts go out to you and your family. We, of all people, know in real time the trials and tribulations you have had to overcome! Treacherous storms in life wich must be navigated in uncharted waters. The task is daunting and I well know the fortitude and courage that must be summoned during this season. Our thoughts and our love go out to your family. We pray that Maria will have joy and health well into her golden years but more importantly may the Lord keep and bless her. One of Cariann's favorite songs would be " The Healer " by the Talley trio, a southern gospel group perhaps Maria will get a blessing and some comfort. Tell Maria Cariann said " Hi " We are all thinking of you and your family.
With warmest wishes and heart felt empathty The VanderWesten Family. vwesten5@cs.com P.S Please notify me if you recieve this.